Fractured: Life with a Head Injury

What I Learned on My Vacation

2011-05-13T13:37:00.000-05:00

It's been 17 months since my traumatic brain injury, and if there's been one constant in my life during that time it's been doctors. Each week, I see multiple doctors and therapists several times a week. Some weeks, I have two or more appointments in one day. Other weeks I have an appointment each day of the week. Sometimes it's both.

I've come to know my doctors, therapists and the medical staff in their offices very well, and have formed very good relationships with almost all of those I see regularly. They have become very much a part of my life and, without question, an integral part of my ongoing recovery process.

But - and there's always a BUT - seeing doctors on such a regular basis can also begin to wear on the mind, body and spirit. Even though I know I need them, it often feels like my life is consumed by medical appointments, insurance costs, confusing explanations of benefits, and the overwhelming sense that this is not what life should be all about.

A little over four weeks ago, as I was preparing to leave for a three-week vacation in Europe to visit with family and friends, I was in a very bad place emotionally. I felt overwhelmed with my conditions caused by the TBI and consumed with fear about the financial pressure all my treatments have put on us.

I had been on vacations before since my TBI, but this one was going to be an especially long one, and I was scared of many things. Would I feel miserable and ruin the trip? Would I run out of medications? Would I trip and fall in a foreign country? What would I do without my doctors, therapists and TBI friends and support groups?

Now that I've been home a week and have had time to reflect, I realize what a blessing the vacation was and how much it did to increase my confidence and sense of independence and liberation. It's not that I didn't have rough times, but I realized that I had the tools to deal with them, as well as the patience and support of my husband, family and friends.

Surprisingly, I took far less of the pain and anxiety medications than I thought I would need. My balance and coordination at good times was decent even on the roughest old cobblestone streets. At bad times, I managed by pacing myself and holding on to David. Even in big crowds I could tell that my anxiety levels were lower than they had been in the past. At times, I was enjoying myself so much I didn't even register anxiety or panic.

Most significantly, perhaps, was the realization a few days after we got back that I had managed just fine for three weeks without doctors and had more than taken for granted how wonderful it was to be free of any medical appointments! Granted, by the time I went to the neurologist, I was more than ready for my monthly nerve block injections for my pain, but even then I discovered that I needed fewer than in the past.

As my neurologist said when he demonstrated why I no longer need the nerve block injections in my forehead, but now only my neck, shoulders and back: "You've graduated to the next level."

Yes! I've graduated in many ways, I guess. And my vacation was a turning point for me. It helped me take a step back and see the transition more clearly and with a fresh perspective. I'm far from "cured," but I am improving, and that is a tremendous blessing made even more so by the recognition of it.

While I was away, I also saw one of my ambitions come to fruition: to publish a book. For years I have been writing historical non-fiction articles for magazines, web sites and blogs. Now I have a book! "An Unusual Journey Through Royal History" is the first of what I hope will be many books that I publish. Lord knows I'm not going to let my TBI get in the way of my hopes and dreams, not while I have an ounce of strength left in me!

To me, all of this says so much for what we as TBI survivors can achieve. I know so many TBI survivors who are doing wonderful things with their lives. Whether it's publishing a book, hosting a radio program, serving as an advocate, running across country, moderating an online support group, being a great parent... I could go on and on.

Sure, doctors have a lot to do with our recoveries, but doctors can't heal us without our cooperation or make us determined to move forward with our lives. They are like parents who do the best they can when we're in their care and leave the rest to us.

The bottom line is that those of us who have survived TBIs are survivors in endless ways. We are people who don't give up, and our immense challenges make us stronger, more resilient people. We just need to take a step back sometimes to recognize how far we've come in our individual journeys and see how much we've achieved.

Brain Injuries Don't Take Vacations

2011-04-19T15:55:00.000-05:00

A traumatic brain injury is a confusing affliction. At least for me. There are times I seem to do very well. My confidence swells. I think I've gotten over the biggest hill and then, WHAM... I feel terrible again.

By terrible, I don't necessarily mean the pain because that I deal with to some degree every moment of every day. What I really mean is my emotional state-of-mind and overall sense of physical well-being. When one of these three elements happens at a time, I can usually manage okay. But when all three hit me, I'm literally down for the count.

The worst part is how hard I am on myself at these times. I expect more and better from myself and don't like it when I'm unable to do reach those standards.

Right now, I'm on vacation, and after three full days of sightseeing by foot, I suddenly switched into what I've referred to before as my zombie mode. Everyone else saw it, but I kept trying to deny I was anything more than "just tired." In reality, I knew I was critically exhausted and unwell, but I was more concerned with not letting others down by saying I had to go back to the hotel.

Instead, they told ME I needed to go rest and that I wasn't to worry about them. They were all adults and could do quite well without me, they lovingly informed me, as they sent me off with kisses and hugs.

So what on Earth is wrong with me? Why am I more concerned about everything except my own well-being? And when I'm taking care of myself, why do I feel guilty?

Why, for instance, do I feel guilty that this is the first blog I've written on vacation? It's not that I think people can't live without reading my blog (I'm not THAT narcissistic!). And it's certainly okay for me to take a vacation from my blog on my actual vacation, but here I am, writing a blog.

I do know this: ever since I started writing this blog and started meeting others with brain injuries, I've felt very connected to so many wonderful people. They are always there for me, and I for them. But when I'm feeling my worst and disappear into solitude for a while or even go on vacation, I feel the loss of those connections very deeply. And I feel my ability to help others is gone and I'm a failure to help those I care for.

Our problems are always with us. They don't take vacations. But sometime our problems force us to take breaks, during which, our ability to help others is limited while we nurture ourselves. As for vacations, well, I should be enjoying myself as much as I can, but I also want to keep that vital connection open, especially when I'm feeling a little rough.

So I blog - from my vacation - to tell all my brain injury friends, I haven't forgotten you! You're here with me, supporting me and, hopefully, knowing I'm supporting you, too.

Dark Places

2011-04-03T15:53:00.000-05:00

As a child, I had terrible, vivid nightmares that would jolt me awake in sobs or screams.

My mother would come into my bedroom and ask me what I was dreaming about, but I didn't understand and couldn't explain them. I would ask her to stay with me, and she would sit or sleep in a chair near my bed.

I didn't need a light; just knowing she was there with me in the darkness was a comfort, and I would eventually fall back to sleep and escape the nightmares.

Now, the nightmare I can't understand or explain is my traumatic brain injury and the way it makes me feel - physically, emotionally and mentally. At times, all three elements collide and send me into dark places within myself, and I'm usually unwilling to invite anyone inside. Instead, I close the shutters and hunker down until the storm has passed.

Since my TBI, I've been through this many times. In the past, it has usually come and gone without much effect on life outside my safe little bubble of my husband, family, close friends and medical professionals. But that all changed when I started writing this blog and began meeting others with brain injuries.

As I opened myself up through this blog, I connected with so many people with struggles similar to my own. They inspired me and helped me realize I wasn't alone. Many have become close friends who I can help and who help me as we battle the turmoil of our brain injuries and their consequences.

The feelings of connection and understanding I have with these wonderful people and that I get through writing this blog are profound. They're also frightening and overwhelming at times. I find myself getting lost in the feelings I have about the struggles we all go through - our pains, frustrations, fears and helplessness - and how little help and understanding we often get outside of our own group.

Throughout March, as my hopes for raising awareness and understanding of brain injuries during National Brain Injury Awareness Month crumbled and came to nothing, I descended into a very dark place. Filled with conflicting emotions at one moment and entirely devoid of feeling at another, I pulled away from my TBI friends and my blog. I raged and cried. I curled up in a ball and wished to evaporate into thin air. I rallied here and there, making a few steps forward, only to fall back again.

By the day of my birthday on March 30, I was inconsolable, despite an abundance of love, good wishes and some very positive news. I couldn't understand my hopelessness when there was hope, or my lack of happiness in the face of so much good. I just felt like I had let people down because I had fallen apart when I wanted to be strong, and I couldn't do and achieve all the things I had hoped to achieve.

I felt guilty and like a failure, and at times I just wanted to divest myself of my identity as a TBI survivor altogether because I felt I couldn't even get that right. I hoped in vain that this was all just one of my horrible, vivid nightmares coming back from childhood to haunt me, and I would wake up with a sob or a scream. David would be there to tell me it was just a dream and hold me until I fell back to sleep. Instead, I would wake up each morning to find myself in the same dark place.

Until now, I found it impossible to say all of this to almost anyone. As a writer, I sometimes find it easier to bare my soul this way than by talking. Writing is also very cathartic for me, and one of the easiest ways to work through what I'm feeling. This time, however, it wasn't writing that brought me to my senses.

Instead, it was the thought of my childhood nightmares and the memory of my mother's presence in that chair in the darkness that helped me recognize that I've had the same loving comfort surrounding me all the time I've been in this present dark place.

Everyday, I get e-mail and phone messages of love and support from my TBI family. They tell me they appreciate all that I do for our cause and remind me that they are there for me like I've been for them. The same people I've been feeling like I've failed believe in me and support me, no matter what I think or feel about myself.

In addition, the people that are physically close to me don't think I'm a failure just because I'm in a dark place. They also believe in me and support me no matter how low I feel.

As much as I've tried to squeeze almost everyone out of my dark place, they've been there with me providing comfort I was unable to see... until now.

I have no doubt that I will still find myself in dark places; but I hope in the future I won't forget that I am never really alone in the darkness.

My Two Birthdays

2011-03-22T14:55:00.000-05:00

When I started writing this blog last December, just before the one year anniversary of my traumatic brain injury, I knew no other TBI survivors. That all changed with my first blog post when I suddenly connected to hundreds of people like myself.

Since then, the world has opened up to me with a wonderful group of people who support and love me, even though they've never met me.

Through them, I've learned that I have two birthdays. The day I was born, and the day I survived my TBI. As my actual birthday nears, I can't help but think more about my TBI birthday - December 23, 2009 - and how important that day is to remember.

I didn't recognize my first TBI birthday, partly because it was too upsetting and partly because I didn't have the perspective on it my new friends have given me. But now that I approach my 37th birthday on March 30th, I realize that I might not be here today had I not survived my TBI on that day in December when I was still just 35.

One of the few memories I have immediately following my fall was when the paramedics were in our home. I'm told there were seven or eight of them. I don't remember their faces from that day, but I did hear some of their voices. One was asking me questions. Another, somewhere else in the room, was talking to someone on a walkie-talkie, and I remember hearing him say something like "35-year-old female... head trauma..."

Hearing those words scared me and I suddenly thought I was going to die. I kept thinking of Natasha Richardson. I remember saying to the paramedic tending to me, "I'm only 35. I don't want to die like Natasha Richardson."

Those of you who read my blog regularly or talk to me have heard me relate this story before, but it's a significant memory to me, as I was suddenly faced with my own mortality at a young age. I really didn't want to die.

Sadly, there were times not long after my TBI that I DID want to die because the pain was so intense and I felt so miserable, emotionally, mentally and physically. But with the passage of time, I cherish my life - even on the really bad days - and am so grateful to be here to celebrate another year of life.

My TBI has changed my life - in both good and bad ways. There's no doubt about that. It's so hard to say this without sounding cliché, but I think the struggles have made me appreciate what I do have, and I believe I have more meaningful purpose and direction in life now than before my TBI.

None of us ever knows when it's our time to go, but I do know that December 23, 2009 was not my time. So on March 30th, I'll be celebrating both my birthdays - my first and my second.

If you'd like to help me celebrate, please consider a donation to the Brain Injury Association of America in honor of both my birthdays. Thank you!

OpEd: Brain injuries need - but don't get - the same level of awareness as other diseases

2011-03-17T13:12:00.000-05:00

Since no newspaper would publish my OpEd for National Brain Injury Awareness Month, I figured I'd just have to do it myself, so here it is! -Tori

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March is Brain Injury Awareness Month.

I wonder how many people are aware of that?

Or how many know that an estimated 1.7 million Americans sustain traumatic brain injuries (TBIs) every year (according to the CDC)?

In contrast, just over 200,000 women were diagnosed with breast cancer in 2007 (CDC).

Yet while most people recognize Breast Cancer Awareness Month, Brain Injury Awareness Month goes virtually unnoticed.

This is not to minimize breast cancer. I applaud the organizations that have raised awareness for causes like breast cancer. They’ve saved many lives.

But the statistics are clear: more people die of brain injuries each year (approximately 52,000) than from breast cancer (40,598 in 2007), fatal motor vehicle crashes (30,797 in 2009), and homicide (18,361 in 2007), according to the CDC.

Overall, the CDC states: "TBI is a contributing factor to a third (30.5%) of all injury-related deaths in the United States."

Despite these statistics, traumatic brain injuries are not on the priority list of causes, even with such high-profile cases as Arizona Rep. Gabrielle Giffords.

What you'll rarely hear about are the millions of other TBI victims and survivors who go virtually unnoticed.

These are average, everyday people who may appear normal and functional on the outside while havoc is being wreaked in their brains, bodies and lives.

It's not uncommon to find TBI survivors whose marriages have been ruined, children have been taken from them, friends have dismissed them, or have even been shunned by their families.

Many can't work or go to school. They may have debilitating pain, anxiety and depression that prevent them from leading fully-functioning lives. Some spend much of their time in doctors' offices, undergoing various therapies and painful treatments, and spending thousands of dollars in the process.

Still others go untreated or under-treated because they are misdiagnosed or can’t afford proper medical care.

I know all of this because I am a traumatic brain injury survivor.

Two days before Christmas 2009, I slipped on the wet kitchen floor in our home, sustaining a severe concussion, an occipital skull fracture, a subdural hematoma and, among other things, severing my olfactory nerve.

Since then, I’ve been on a long and painful road of recovery. But, in many ways, I’m one of the “lucky” TBI survivors.

I’m receiving excellent care by a great team of medical professionals. I have a loving husband, a supportive family and caring friends. And despite the financial burden of my medical expenses and living on one income much of the time, we've managed to keep our heads just above water.

Not everyone with a TBI is this fortunate.

Before my own brain injury, I was one of the millions unaware of the seriousness and extent of brain injuries in the U.S. or about their immediate and long term impact on the body, mind and soul.

Now that I know first-hand what it’s like, the most important things I can do are share my story as a TBI survivor and be an advocate for the cause.

My goal is to see brain injuries receive the same level of awareness given to causes like breast cancer.

Not all brain injury survivors are politicians, sport's heroes or celebrities. We are your friends, neighbors and extended family members. You might even be one of the 1.7 million Americans who either have or will sustain a traumatic brain injury each year.

And we want you to be aware of traumatic brain injury because awareness is the first step toward dedicating the research and resources that eventually lead to real help for traumatic brain injury victims and their families.

My Little TBI Epiphany

2011-03-16T09:00:00.003-05:00

I started out this month with great hopes for National Brain Injury Awareness Month. I wrote an editorial on the subject and sent it to The New York Times, despite knowing the odds of having it published there were slim to none. Naturally, it was not published.

So I turned to my local newspaper, The Dallas Morning News, thinking I'd have more luck there. Despite several calls to the editorial department and a glimmer of interest, I received an e-mail from that publication explaining that although it was well-written and they agreed the cause was an important one, they just "didn't have the space."

Angry and disappointed that my own hometown newspaper wouldn't run something so pertinent on their OpEd page for lack of space, despite having ample room for such banal commentary as the Oscars and local supermarkets, I wrote back with a letter expressing my frustration. Why, I asked, wouldn't they make space for commentary written by a local resident affected by something that affects millions of Americans, especially during a month dedicated to raising awareness to the cause? No response, of course.

I felt extremely let down and bitter, but I continued to seek other media outlets who might be interested in covering brain injury awareness issues. All my efforts - calls, e-mails, inquiries - led to nothing.

In less than two weeks, I had expended what little energy I had for nothing and I was resentful and feeling entirely impotent. Why wouldn't anybody listen to me? Do they just not care?

I realize I'm not "important" or famous, but I'm a traumatic brain injury survivor who is able to articulate the problems that we as survivors must deal with. Isn't that more important than celebrity? Obviously not, is the conclusion I came to.

With my energy levels already down, I fell into a state of anger, frustration and confusion. What am I doing all this for if no one listens?

Then, through an unexpected event, I had an epiphany. I call it a "little" epiphany in the title of this post because the answer has really been there all along and I've known it all along. It just got lost in my enthusiasm to reach what is probably right now an unattainable goal.

The epiphany is this: I don't write this blog and advocate for myself and other traumatic brain injury survivors and their families to get the attention of the media; I do it to help myself and others in similar situations.

This blog gives me a place to vent and voice my feelings, share those of others, and be a voice for those who can't speak for themselves. It helps me come to terms with what I'm going through on a daily basis and helps me connect with others.

My last post, "I'm Healthy, Except for a Chronic Illness Called TBI," punctuated this in a very profound and unexpected way. I wrote that post in a moment of sheer exasperation, pain and misery. At the time, it just seemed like a typical "venting" post, but it became a turning point and the opening to my epiphany.

Early Monday morning, I received a call from my neurologist's office asking me if I could come in at 11:30 that same day. I went. Dispensing with the services of the nurse, my neurologist, Dr. Brian Sorin, who I've mentioned in this blog before and have always thought is fantastic, brought me right back to the exam room and asked me how I was doing. I responded that I was a mess.

He said, "I know. I read your blog."

Can you imagine that? A doctor who takes the time to really connect with his patients in a personal way. He said he understood my frustrations and had some fantastic ideas on further treatments and help for me. We had a wonderful conversation, I had a few injections, and I left feeling like a huge weight had been lifted from me.

No, all my problems were not solved by this one appointment. I still have a long road ahead. But I realized that my blog did do something. It helped my doctor connect with me and I with him in a way we hadn't connected before.

This is the little epiphany. I'm reaching for the stars and getting frustrating when the ladder I'm standing on can't reach that high, but not realizing that what I'm doing is helping, albeit in small ways. But in that sense, it's a lot like my recovery process - both advocacy and my recovery happen in baby steps, not by huge leaps and bounds.

If I expect too much from either one, I'm only going to be disappointed. But if I keep trying, as persistently and consistently as I can, one day I might just reach the stars.

I'm Healthy, Except for a Chronic Illness Called TBI

2011-03-09T23:05:00.000-06:00

I don't know what's wrong with me lately, but I've been feeling so tired, listless and depressed. My body, mind and spirit are all in sync, but not in a good way. My concentration is worse than ever, I'm taking two naps a day, and I'm frequently frustrated to the point of tears.

My night sweats haven't stopped, and the pain behind my eyes and my visual disturbances are troubling me to the point of distraction.

I've had so many tests done, so much blood and fluid taken out of me, and so many injections in the last six weeks, I can't help but wonder if my body is just retaliating.

To add insult to injury, I have what seems to me like a giant dent in my forehead that just appeared out of the blue about two weeks ago with no explanation. Two neurologists have looked at it and have no idea what it is or why it's there.

Going into my 15th month as a brain injury survivor this is all very baffling. I thought I was supposed to be getting better with time. Right now I feel worse.

As for the reasons I'm feeling this way, well, the possibilities seem endless. That's what all the testing has been for, but so far nothing has been conclusive. The good news is I've been tested for just about every illness under the sun and - other than this damn traumatic brain injury - I'm "healthy."

But how can I be "healthy" when I have a chronic illness with symptoms that go undiagnosed?

After all, traumatic brain injuries are a chronic illness. This will never go away for me. Some symptoms may improve over time, others will linger. More often than not - until research of the brain and brain injuries gets better - there will be no answer or solution to many of my problems. They'll be like the dent in my forehead: an enigma even to the best doctors.

Maybe it's this reality that is making me feel depressed lately. After all, hypothetically, I shouldn't be depressed since I'm on medication for that. And perhaps all the treatments and tests done in such a short period of time have just sapped my energy. On the other hand, it appears that I still need more tests to get to the root of the problem. Classic chicken and the egg scenario.

One thing that keeps coming up as a solution to all my problems is more exercise. I realize logically that exercise can increase endorphins and that studies show it's helpful in regenerating brain cells, but how am I supposed to exercise when all I want to do is sleep more?

About eight months ago, when my insurance would no longer cover my vestibular therapy for my balance, coordination and vertigo issues, I signed up for a belly dancing class at the local rec center. I do this once a week and I love it. My instructor knows all about my TBI and challenges and has been wonderful with me. But there are nights like tonight that my body screamed "No!" to much movement, so I didn't go. I know I have to listen to my body, but then I feel guilty and lazy, especially when everyone is telling me to get MORE exercise.

I'm not giving up on myself physically. Far from it. I just took delivery of a new three-wheel bicycle ("adult trike") yesterday, so my husband and I can go on rides together in the trails near our house without worrying about me falling off a traditional two-wheeler and sustaining another TBI. I'm really excited to use it once it's assembled. I just hope I can get over this lethargy and get out there.

After all, I'm "healthy," right? So what's stopping me? Just this little thing called a TBI and its nasty symptoms that no one can explain and I seem helpless at times to successfully fight against.

I have to remember that all along my so-called recovery has gone in stages. Sometimes I'm up. Sometimes I'm down. Right now I just happen to be way down. Hopefully, this will pass and I will move on to whatever is next.

Right now, though, all I can think about is how much I would love to be a kid again and have all the energy I had then. I want to run, bike, climb and play - all without fear of hurting myself. I want to have that feeling where I hated when my Mom called me inside because it was getting dark outside and I needed to come indoors, or when the idea of taking a nap or having to go to bed was dreadful.

I don't want to feel like at the age of 36 I am tired, lethargic, and faced with a life ahead of me full of chronic pain and mysterious and troubling symptoms.

I will get past this. I just want to get past it now. Patience is not one of my virtues.

Guest Post: David McGuire's "A Run to Remember"

2011-03-05T10:00:00.002-06:00

I like to think that all brain injury survivors are figuratively running a marathon every day, just to get through each day. For me, no matter how much or how little I do, it certainly feels at the end of the day that I've run a marathon.

Although I am trying in my own way to be an advocate for brain injury survivors like myself while running my own figurative marathon, I've recently met a fellow brain injury survivor who is being an advocate by literally running a marathon a day.

Starting in April, David McGuire will run a marathon a day clear across Canada. I'm in awe of him and what he is doing, and I'm proud to have him as a guest blogger on my site. Here is his story.

-Tori

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In 2005 I suffered a TBI (traumatic brain injury) due to blunt force trauma to my head. My brain started to swell inside my skull, and with no room to go I would soon be dead. So a portion of my skull was removed and placed in liquid nitrogen to allow my brain space to swell and then recede. I was in intensive care for 29 days. I was not expected to wake up, let alone walk or talk again.

I am now a person with a disability. Suffering major damage to my brain, I now suffer from short-term memory loss, and a form of Aphasia. If you have seen the movie “Memento,” you have an understanding of what that means. If not, it’s kind of simple. I don’t make new memories. So tomorrow I will not remember emailing you.

While I did start to get back my long term memories (i.e. speaking English, the ability to walk and talk, knowing not to jump into traffic), I no longer make new memories. I have also lost my internal GPS. I not only forget where I am, but also where I am going, what to do when I am there, and then how to get home afterwards.

I don’t need to tell the people reading this the stats of brain injury, or the difficulty we find getting back to “normal” is.

As a person with a disability - and particularly with my memory loss - it is difficult to hold a job. I forget what I am doing. I mean, when you order your coffee you expect the barista to remember what you ordered. Bosses like it when you remember to get people to pay for the items, too. So I live on a disability income of C$635 a month. I am able to earn a little more when I teach running clinics, such as at the Running Room, and when I work part-time at a friend’s store.

Despite these difficulties and being mentally challenged, I am now an advocate for brain injury survivors. I have been a speaker at both the Okanagan Conference on Brain Injury and the Victoria Brain Injury Society’s second annual Helmut Festival.

I am also physically strong. I ran the 2006 Chicago Marathon less than a year after being told I may never walk or talk again. I completed my first triathlon in 2007 (Olympic distance) while I taught several running clinics at a local Running Room and ran the Sun Run. Then I finished the Penticton Ironman 2009 - a true dream come true. My next goal was the Goofy Challenge in Disney World this past January (1/2 marathon on the Saturday and a marathon on the Sunday).

Since then, I've been training to run a minimum of a marathon a day to raise awareness and funds for people that suffer brain injuries, in partnership with Braintrust Canada http://www.braintrustcanada.com/.

On April 1, 2011, I will begin "A Run to Remember" in St. John's, Newfoundland, running a marathon a day until I reach Victoria, British Columbia in October 2011.

With the help of my Garmin GPS devices, I plan to record my journey and upload each days run at http://www.runtoremember.com/ so people can track my running and predict when I am in their neighbourhood.

If what I'm doing can help even one person get a computer, a wheelchair, or whatever aid they need, I will be happy.

The motorhome, the gas, the gear, it’s all on me and my wage to pay for it, along with the support from Braintrust. I just want to share with people the joy and freedom that technology and running gives me.

I have been poked, prodded, scanned, x-rayed, had sleep-deprived EEG’s, and had tubes put in places tubes should not go. I have had to “prove” my abilities, and I have tried to go back to school. Now, $16,000.00 of student loan debt later and about six attempts to find a job, I have worked very hard to hold on to the two things that keep me getting up in the morning: my wife and the hope that if I can help even one person not go through what I have gone through, I will sleep better.

Dave McGuire
http://daves-runtoremember.blogspot.com/

Call to Action for Brain Injury Awareness Month

2011-03-01T15:13:00.000-06:00

Today marks the first day of National Brain Injury Awareness Month.

One of the first objectives of this month is probably to make more people aware that there is such a thing as Brain Injury Awareness Month!

Whether or not you or someone you know and love has a brain injury, this call to action goes out to you: Please help raise awareness not only of Brain Injury Awareness Month, but also of the desperate need for research and understanding of brain injuries.

First, an explanation. If you're wondering what constitutes a brain injury, I've cited the following information, available on the Brain Injury Association of America's web site:

"Traumatic Brain Injury (TBI)
"TBI is defined as an alteration in brain function, or other evidence of brain pathology, caused by an external force.

"Adopted by the Brain Injury Association Board of Directors in 2011. This definition is not intended as an exclusive statement of the population served by the Brain Injury Association of America.

"Acquired Brain Injury
"An acquired brain injury is an injury to the brain, which is not hereditary, congenital, degenerative, or induced by birth trauma. An acquired brain injury is an injury to the brain that has occurred after birth.

"There is sometimes confusion about what is considered an acquired brain injury. By definition, any traumatic brain injury (eg, from a motor vehicle accident, or assault) could be considered an acquired brain injury. In the field of brain injury, acquired brain injuries are typically considered any injury that is non traumatic. Examples of acquired brain injury include stroke, near drowning, hypoxic or anoxic brain injury, tumor, neurotoxins, electric shock or lightening strike."

The statistics for brain injuries in America are shocking. I've detailed them in a previous post, so will only say here that the CDC estimates that 1.7 million Americans sustain a traumatic brain injury annually. This figure only encompasses traumatic brain injuries, not acquired brain injuries.

More alarming than the statistics are the effects of brain injuries on the lives of the individuals who sustain them (if they survive) and those of their families, even if the brain injured person lives.

Sadly, brain injuries seem to escape the notice of most people around the world who are not directly or indirectly affected by them. The only exceptions seem to be when the brain injury is sustained by someone famous who then dominates media coverage for their "five minutes."

Before my own brain injury on December 23, 2009, I was admittedly one of the unaware masses. But a simple slip on our wet kitchen floor changed my life forever, and I learned about brain injuries the hard way.

I would like others to learn about brain injuries the easy way: by taking the time to acknowledge and understand them for the serious medical condition that they are, and realize that there are millions of people out there who desperately need national and global awareness to raise funds, increase research, create better support systems, and help improve medical understanding.

If only people could respond to the cause of brain injuries like they have responded to causes like breast cancer.

In my shoes, it's difficult for me to understand how a cause that injures and kills more people each year than even breast cancer can be so ignored. Don't brain injuries deserve the corporate sponsorships, annual runs and massive foundations that other causes have?

Those of us who have brain injuries think so. But we have to create our own causes and work at a grassroots level to get anyone to notice us. As a result, we move by inches instead of by miles. And we need your help.

A few months ago, I met another brain injury survivor, Anaperla Aureoles, who inspired me deeply. She shared with me her dream to have 1000 brain injury survivors share their personal stories with President Obama. I promised Ana that just as she had inspired me, I would be her voice, so I started a cause on Facebook called Ana's Dream: 1000 TBI Survivor Stories to President Obama and Politicians.

A little over a month since starting Ana's Dream, we already have nearly 300 members of the cause.

My dream for Brain Injury Awareness Month - and my call to action for everyone reading this - is to help us reach our goal of 1000 survivor stories by the end of March. This means not only spreading the word about Ana's Dream, but writing letters to President Obama and your local and state politicians about the importance of brain injury awareness.

Even if you don't have a brain injury or know someone who does, please help us spread the word and raise awareness of brain injuries. Anyone can join Ana's Dream and write a letter to the President or to their politicians explaining just how important this cause is.

You don't have to run, walk or donate any money. Just share the dream, join in building awareness and send an e-mail or letter to your politicians. That's it.

With your help, we can make this Brain Injury Awareness Month a successful one and make brain injury awareness more than just a little known awareness month, but a cause that is readily recognized year-round.

The TBI Roller Coaster

2011-02-24T11:53:00.000-06:00

I recently likened my recent feelings about living with a traumatic brain injury to a hot-air balloon ride, so I apologize in advance for applying yet another analogy. But living with a TBI is like living every moment of every day on a roller coaster.

Because it's such an obvious analogy, there's little need for me to expound much on it, other than to say that there are a lot of ups and downs, many of them unexpected and frightening.

That said, many of us with TBIs who also consider ourselves "Type A" personalities tend to want to control our situations as best we can, even the parts we know we can't control.

Personally, I tend to push myself too far sometimes, aiming too high and expecting too much from myself even when I'm feeling terrible. On days when my body won't allow this pushing, I get frustrated and disappointed with myself (something I'm working to improve).

Things have been especially difficult for me recently, as I'm dealing with symptoms that are new and confusing, and treatments that are helpful but take a toll on the body, mind and spirit.

As I deal with the pain and treatments, I am also trying to work, write and be an active advocate for TBIs. I'm also preparing for a writer's conference this weekend that I want to be at my best for. Following that, Monday morning, I will have another MRI to try and determine what exactly is going on in the mess called my brain.

Yesterday, I had around 30 injections in my forehead, skull, neck and back. A combination of Dysport (Botox) and nerve block injections that help ease the pain caused by neuralgia by directly targeting the muscles around the nerves and the nerves themselves.

Needless to say, yesterday was not a good day, and I woke up feeling like today could go either way, depending on which part of me won the daily battle: my personality or my pain. And then I read a quote posted on Facebook by a TBI friend:

"Each morning we are born again. What we do today is what matters most." -Buddha

Talk about reading something I needed to hear.

Right now, I know that what I did yesterday - which was close to nothing - was what I needed, and that's okay. It also doesn't matter today what I did or didn't do yesterday, because like my favorite fictional heroine Scarlett O'Hara would say, "Tomorrow is another day."

For me, today is what matters, and what I do today is what matters, whether it's a little or a lot. I'll do as much as I can handle and not sweat the rest.

Having a TBI may be a roller coaster, but it's one I need to become accustomed to. I can't fear the ups and downs or worry what's coming around the next corner. I need to remember the words of Buddha and Scarlett and live for each day, just doing the best I can.

Guest Blog: Caitlin – College Student and TBI Survivor

2011-02-22T14:54:00.000-06:00

I am so grateful that in the course of my blogging I've had the privilege of meeting so many wonderful and inspiring traumatic brain injury survivors.

One I met recently, Caitlin Elizabeth Haws, has touched me deeply, partly because of her youth – she’s 19 – and partly because of her tremendous courage and resilience.

Last week, I asked if she would be interested in writing a guest post for my blog and she graciously agreed. Knowing she’s a busy college student, I expected it might be a week or so before she could get something to me. Instead, I had her post in my inbox within two hours. Now this is a young woman to be reckoned with!

This is Caitlin’s story.

*********************************************************************************

On April 12, 2008, I became a traumatic brain injury survivor. I was involved in a motor vehicle accident that left me in a coma for about four weeks.

I suffered a severe TBI along with a 4th nerve palsy in my right eye, a shattered cheekbone, broken right collarbone, a cracked rib, a punctured lung, broken pelvis, broken tailbone, and a broke right ankle.

To this day, I still suffer from balance issues and my hearing and vision aren’t up to par. I also have a tendency to forget things.

Living away from home on a college campus, I now have to compensate for the way I do certain things. Just think, college is already pretty stressful, right? Imagine how much more stressful it can be with a TBI.

I do have an individualized education program (IEP) for students with disabilities, which does help me tremendously; but because I am slower in my writing, reading and comprehending, there is always the worry that I won’t read everything on time, or I won’t write the paper in time, or that I just won’t pass the exam.

Through my IEP I am allowed extra time for exams and I can take my exams in seclusion. If required, I am allowed to turn in papers at a later time, and I’m also allowed to bring a tape recorder to my classes to record lectures.

I have many different emotions inside of me at this point in my life. I worry about the future and what it holds for me. Everyone says I am strong, but anyone can be strong if they are shoved into something as dreadful as a TBI.

God is on my side, that much I know because it is almost three years, and according to the doctors I am not supposed to be walking, talking, driving, and living on my own in college. The way they saw it, my life had pretty much stopped the second that car hit that tree.

I never once blamed God, nor has my faith quivered. If anything, my faith has become stronger, and that is why I do not understand why I get so overwhelmed and worried about doctors’ appointments or normal, college student life.

Sometimes I just wish I could sit and cry, but I worry that once I start crying I will never be able to stop.

By Caitlin Elizabeth Haws

Zombies, Stepford Wives, Hot-Air Balloons and My Traumatic Brain Injury

2011-02-19T18:10:00.000-06:00

This past week I've felt so listless, tired and disconnected that I've likened myself to everything from a zombie to a Stepford Wife.

I realize, however, that both identifications are wrong because of two critical elements: anxiety and fear. I'm not an expert on zombies or Stepford Wives, but I don't think either of those fictional creatures experience these particular emotions.

As I write, I'm not quite sure where I'm going with this. But maybe that's the whole point: I'm not quite sure where I'm going with anything right now. I feel suspended in mid-air, not sure where or when I'm going to land.

Several years ago, a friend of mine and I went to Colorado Springs on a girls' spa trip. One day, we woke up at 5:00 a.m. to drive out to a big empty field for a hot-air balloon ride. I had never been up in one before, but I wasn't really nervous. I think I was too tired to be nervous.

In any case, we stood in the cold while the balloon was inflated and we were given instructions and rules. With the balloon full, we climbed into the basket with 8 or 10 other people and off we went. Right now, I don't remember a lot about our ascent, but I do remember being in the air.

Even with a coat, hood and gloves it was cold. My feet were freezing. But the land below was beautiful. It had snowed, and as the sun was rising, the snow and frost looked golden and sparkling. If people were talking, I don't remember. It seemed so quiet and peaceful as we were carried by the wind.

And then just as I was enjoying the peace and quiet and my ears felt like they were going to freeze off, there was a sudden burst of noise and heat as the pilot started the burner to keep us aloft.

It was startling, breaking the silence and peace, but also warming as the heat was so close that my frozen ears felt like they were melting. The heat never reached my toes though, and it was such a strange mix of comfort and discomfort, ease and uneasieness, silence and noise.

As we started to descend, we were reminded that landing a hot-air balloon can be bumpy and unpredictable depending on wind, weather and other conditions. There was a good chance our basket would fall on one side. We were told to brace and hold on tight. As we got closer to the ground, the bottom of the basket stayed level, and we sort of skipped and bumped a few times across a frosty field until we finally came to an upright stop. Relieved and exhilarated, we all got out and headed toward the van to take us back to our starting point.

I tell this story not to wax poetic on my personal memories, but because it reminds me of the "ride" I'm on right now with my traumatic brain injury.

I was never afraid of slipping on the kitchen floor and fracturing my skull, just like I wasn't afraid of taking my first hot-air balloon ride. People take hot-air balloon rides all the time and never get hurt, just like I had walked across the kitchen floor hundreds of times without incident. But then accidents can happen anytime, anywhere, whether we're afraid or not.

Although the conditions were right for a relatively smooth and ultimately safe landing in the hot-air balloon that day, they weren't on my side the day I fell and had my TBI. But, as I've always believed, everything happens for a reason. Since I'm still here today, I have to think there's a reason for that, too.

I can't help but feel that my hot-air balloon ride and my journey through my TBI are similar. There are a lot of things I don't remember about both. Each "ride" has given me ups and downs, moments of quiet pondering broken by sudden flashes of noise and heat that startle and frighten me.

With my TBI, the quiet moments can be good or bad; moments of peaceful reflection and gratitude or of depression and sadness. The "noise" represents - and often is the source of - my anxiety and fear. The "heat" is the confusion, pain and bewilderment I feel.

Then there's the pilot, or in my case, pilots: the doctors and therapists that give me the care and treatment I need. They give me instructions, guidance and relief. They also have a way at times of lifting me up like the pilot in the hot-air balloon did when he'd start the burner to keep the balloon aloft.

Where I am right now is the tricky part. I'm still aloft, but I'm not enjoying the ride, and I fear the landing as much as I fear not landing. My feet are frozen so that I can't seem to move forward; and, in any case, I'm in a basket in the air with no where to go. My frozen ears get relief from time-to-time from the heat of the burner, but that relief also causes a different kind of pain that makes me have weeks like this one.

Right now I'm in that purgatory where I imagine Stepford Wives and Zombies would reside if they could feel emotion and pain.

I know the treatments like the spinal tap on Monday and the doctor's appointment on Thursday to analyze other complications will give me long-term relief and help, but right now I feel both numb and overly emotional, drained and yet reluctant to ease up on myself. Basically a web of contradictions that just numb my brain even more and make me feel useless and impotent.

Something deep inside me (not to mention my husband, family and good friends) tells me I'm not useless and impotent. THEY tell me, and I know it's true, that I'm too hard on myself and expect too much at times, but I want to do more and be more. I want to make a difference in my life and in the lives of others.

I don't want to be stuck in a figurative hot-air balloon. I don't want to think of myself as ridiculous imaginary creatures without control over their own brains or any brains at all!

As I wrote earlier about the direction of this post, I'm not quite sure where I'm going. Like this post, it feels like almost everything I'm doing right now is extemporaneous and leading to who knows where. But I think I'm doing the best I can, and perhaps the things I've written here make sense to someone else, and helps them know they're not alone.

"Titanic" TBI Survivors Sending SOS. Where is our "Carpathia"?

2011-02-16T16:52:00.000-06:00

On Monday I had my spinal tap to remove excess fluid from my brain that was causing pressure and pain behind my forehead and eyes. I couldn't have asked for better treatment and care from my neurologist, the anesthesiologist and the nurses at the clinic. I actually felt spoiled and pampered!

It was also wonderful to have David and my Mom there with me and to receive such an abundance of kind words and moral support from so many wonderful people before and after the procedure. I'm extremely grateful for all my true friends.

But I have to put all the love and gushing behind me for a moment to complain about a few things I feel are wrong.

First is the general lack of understanding of traumatic brain injuries (TBIs) and the corresponding lack of empathy that goes with it.

Second is the lack of representation and advocacy for "regular" people with TBIs (see my recent post "We're Not Athletes or Celebrities, But Our TBIs Deserve Equal Attention and Care" if you haven't already).

Third is the level of difficulty involved for most TBI survivors in getting the care and support they need from the organizations and government programs that are supposed to help them (not to mention the scarcity of such organizations and programs).

Every day we see campaigns, ads and commercials asking for money and support for various important causes like breast cancer and awareness of violent crimes and drunk driving. This is wonderful, and those causes need attention and awareness. But the movement for bringing awareness and support to TBIs seems to be an underground one, mostly done at the grassroots level or at a high-profile level that virtually excludes all the invisible, low-profile TBI survivors.

Go anywhere - from the grocery store to a PTA meeting - and it's very likely someone there is suffering from a TBI. The problem is, you probably won't know it because chances are they'll look like almost anyone else. In fact, statistics show that you're more likely to run into someone with a TBI than someone with breast cancer.

The Centers for Disease Control and Prevention (CDC) web site cites that "on average, approximately 1.7 million people sustain a traumatic brain injury annually." In contrast, the CDC states that "in 2007, 202,964 women were diagnosed with breast cancer." This is not to demean breast cancer, but don't the numbers mean anything when it comes to the importance of raising awareness and support?

The CDC goes on to say that of the 1.7 million people who sustain a traumatic brain injury annually, 52,000 die. Compare this to the number of deaths due to breast cancer in 2007 (40,598), fatal motor vehicle crashes in 2009 (30,797), and homicide in 2007 (18,361).

Overall, the CDC states: "TBI is a contributing factor to a third (30.5%) of all injury-related deaths in the United States."

Yet, despite these statistics, it seems like traumatic brain injuries are the ugly stepchild of causes.

Not only do I suffer from a TBI myself, I am connected to many others with TBIs, and I read and hear every day about their struggles to get proper care and treatment. For many, they are misdiagnosed or overlooked by a medical profession that frequently doesn't understand brain injuries. Still others face losing children and the support of family members because of misunderstandings about the symptoms and problems caused by TBIs.

I consider myself lucky in many ways. First and foremost, I have a wonderful, supportive husband, family, and so many friends - new and old - who have proven their unconditional friendship and support in the past 14 months. As for medical care, although my emergency care following my injury was terrible, I was able to get a team of great doctors fairly quickly afterwards who are helping me make advances in my recovery. But that help comes at a very high price.

For the first year after my TBI, I didn't work. We lived on one income and struggled frequently to pay not only the insurance deductible and co-pay for all my medical expenses, but also for the extremely high monthly premium we pay as self-employed individuals.

At one point, we were unable to pay a huge bill for an MRI and I spent several months trying to work out a payment plan. We weren't trying to dodge the bill, but our savings were depleted and we couldn't pay for it in a lump sum. It was an ordeal just trying to fill out forms and explain to the clinic that we were trying to make good but were financially strained. Because we're not on any state or federal benefits (I never filed for disability), we weren't considered "needy enough." Finally, after many phone calls, forms and letters, I had a call from the clinic's CEO, who was very gracious and gifted us the entire amount of the MRI. I was in tears. I told him it wasn't what I was asking for, but he insisted and was extremely kind about everything.

That was a huge relief, but it didn't solve our problems. Our health insurance premium was increased at renewal, so we talked with the insurance company and decided to go with a lower premium and a higher deductible. It's a trade-off that will ultimately save us money, but means we have to pay more upfront. The procedure I had on Monday was over $3000 and had to go on a credit card because we don't have the cash to pay for it.

I've started working again this year to help contribute to all the expenses, but it's often a struggle to do the work. What was once easy is now a challenge. But I preservere because I have no choice. I either work and we don't go deeper into debt or lose our house, or I don't work and we get closer to the edge. I don't ask for sympathy in this regard. The work is good for me in many ways. It's helping me retrain my brain and gradually building up my confidence and brain strength. At least that's what I constantly have to remind myself.

That said, not everyone has it as "easy" as I do. Many TBI survivors can't work at all. Period. They must apply for aid and look for help where they can get it - and it's not always good help or aid that they get. Even if they have health insurance as we do, it's clearly a financial burden. And we're talking about medical treatment and procedures that are vital and absolutely necessary. But in so many cases, if you can't pay, you won't get treated.

And when it comes to emotional support and finding guidance and information, I have to say that I'm disappointed in the "official" resources that are available. I've called several brain injury organizations with no response. None. When I've called and written, I've asked for help and support, but I've also offered to be an advocate, and still I hear nothing. One organization even kicked me out of the support group because I was advocating in a way that rubbed the leader the wrong way.

So for support, I rely on a great group of individuals I've met through my blogging and Facebook, as well as my husband, family, friends, and my team of medical professionals. But I'm disappointed that I can't seem to get help from the primary resources out there. As I just told a friend the other day, it sometimes feels like we're adrift in a life boat without a paddle and yet there's a big ship nearby that can help but is pretending not to see us.

There is a handful of high-profile individuals like Bob Woodruff who advocate for TBI awareness, but their efforts take a long time to trickle down to the "little people" who are in immediate need.

My husband and I were talking yesterday about Gabrielle Giffords and the tragedy that befell her. We agreed that she was definitely a politician of the people, and it was her literal closeness to the people that made her vulnerable to the violent attack she suffered. We hope - and I know many others with TBIs feel the same - that when she recovers she will continue her activism for and among the people... this time specifically for the lost TBI survivors who are so under-represented. We need a voice and spirit like hers who can stand up and get us the rights and help we desperately need.

In my own feeble way, I'm trying to be an advocate for myself and others like me. I write this blog, I created a cause on Facebook called "Ana's Dream: 1000 TBI Survivor Stories to President Obama and Politicians," I contact media, organizations and government officials, but I can't seem to grab the attention of anyone really "important" long enough to get them to stick with me and help me share our stories.

Why is it like this? I just don't understand. The statistics are there. We're here, adrift at sea like survivors of the Titanic. So where is our Carpathia?

Valentine's Day: Love, Fear and a Spinal Tap

2011-02-12T15:49:00.001-06:00

Monday is Valentine's Day, and I for one can't wait!

But not for the usual reasons.

I'm not expecting chocolates, roses or jewelry from my husband. I don't expect those things from him on Valentine's Day because what he gives me every day of the year is unconditional love and support. If the only thing he gave me in our life together was some chocolate and flowers on one day of the year, I can guarantee you I wouldn't be married to him.

No, this year for Valentine's Day I am getting a spinal tap, also known as a lumbar puncture. And I'm actually looking forward to it!

I am naturally nervous about the procedure, which will remove excess fluid building up between my brain and skull that creates unmanageable pain and vision problems; but I am also eagerly anticipating the relief it should bring. It will not solve all the pain and problems related to my traumatic brain injury, but it will solve one that no other procedure or medicine can.

That my spinal tap falls on Valentine's Day does not bother me in the least. I owe this positive attitude to the love, support and encouragement I have from my friends, family and husband.

Two weeks ago, when I found out that I needed the procedure, I was quite scared and alarmed. My doctor allayed my fears somewhat by telling me he would do the procedure himself and I would be mercifully out cold the entire time.

Still, unfamiliar with the process, I was frightened and uncertain. I talked to many of my TBI and personal friends who gave me advice and comfort. They assured me that many of them had gone through the same procedure and I would be just fine. Their words took away much of my anxiety, and I began to realize that this would not be easy, but it would likely help me a great deal.

I also know that I will not be alone. My husband, who has been by my side throughout my traumatic brain injury, will be there with me on Monday. So will my mother.

This is not to say I am absent of fear about this or anything else. But I think of myself and my fears in two different stages: pre-traumatic brain injury and post-traumatic brain injury.

My fears pre-traumatic brain injury were those of a child, even when I was having them as an adult. Early in my life, I remember well the fear I would have when my father went away on a business trip. I would cry myself to sleep at night fearing that something terrible would happen to him and he would never come home.

As an adult, I worried about things over which I had little or no control. I was afraid of accidents happening to people I loved, losing work, the roof blowing off or caving in, and so on.

I never worried about slipping on the wet kitchen floor and fracturing my skull, changing my life forever. But it happened.

And now I realize that although I still have fears, I can't let them consume me. If I fear everything, eventually one of those fears will come true. Even if I fear nothing, I am not immune to life's realities. If I place myself somewhere in the middle by recognizing rational fears and doing what I can to prevent them, there are no guarantees. All I can do is deal with each fear individually and try to remember a quote I came across recently:

"Courage is not the absence of fear, but rather the judgement that something else is more important than fear."

This beautiful phrase was written by James Neil Hollingworth, writing under the pseudonym, Ambrose Redmoon, who was a parapalegic when he wrote it.

For me, what is more important than fear is that there are so many people who love and support me, who stand by me when I need them, and even when I think I don't.

This is what Monday means to me. My remaining fears of the spinal tap on Monday are not nearly as important as the fact that I am surrounded by loving people and that the procedure will hopefully improve my condition.

Valentine's Day itself is not really important and neither is the fact that I won't be spending it being pampered with chocolates and roses. I don't fear "losing out" on this made-up holiday just because the day to which it was appointed happens to fall on the day I have my spinal tap.

To me, this is not going to be a nightmare Valentine's Day. I think it's going to be one of the best and most memorable Valentine's Days I'll ever have. And I owe it to the love and support of endless people who give to me every day, not just Valentine's Day. I know they will all be thinking of me and supporting me no matter where they are, and that is more than anyone could ask for on Valentine's Day or any day.

Our weekend will not be bereft of joy and fun, however. Sunday night, David and I are going to watch the classic "rockumentary," "This is Spinal Tap." This was David's idea, as he felt I needed to go into my own spinal tap on Monday with a sense of humor. He wants me to be sure to tell the anesthesiologist to: "Crank it up to 11!!"

Tonight, we are going out to celebrate Valentine's Day with another couple. Deb and I are planning to dress to kill. The boys will probably wear jeans. But we don't care. We want to go out and feel beautiful, no matter what anyone else is wearing. For me, I want to look and feel my best tonight, knowing that on Monday I will certainly not be looking my best, but I will be doing what is best for my recovery.

I told David to take a picture of me on Monday either before or after the procedure and post it on Facebook. It's a funny little quirk I'm experiencing. I want people to know that although I post lots of lovely pictures of myself on Facebook where I'm all dressed up; underneath it all, I am just me: almost always in pain, frequently untidy, living a life that revolves around doctors and medical treatments, and always vulnerable in many ways.

That is what the picture of me on Monday will represent: Not the nice, made-up Tori that I will be tonight, but the real Tori, completely unmasked and without reservations about who she is or how she looks. That's the Tori I want people to know and love.

In the meantime, this weekend is going to be about having fun with David and our friends and family; not to celebrate Valentine's Day, but to celebrate life and the fact that living life is more important than living with fear.

We're Not Athletes or Celebrities, But Our TBIs Deserve Equal Attention and Care

2011-02-06T15:50:00.000-06:00

I have nothing against athletes or celebrities. In fact, I'm extremely grateful when the traumatic brain injuries suffered by these high-profile individuals shed much-needed light on the issue of TBIs.

Unfortunately, I take many exceptions to the way these individuals are treated as compared to we normal folks with TBIs.

First, although I realize athletes, celebrities and politicians make for a better news story than the rest of us, I resent the myopic coverage of the news media regarding TBIs.

For the most part, they only seem interested in talking about the subject when it relates to a celebrity or when it's the latest "hot topic" because of increased understanding of the danger of concussions to young athletes. Don't get me wrong, I WANT to see news coverage of this nature, but I don't believe it should be the exclusive domain of a select few notable people or a single group of people who are vulnerable.

Why doesn't the news media cover stories about people who are struggling to get or pay for the medical care they need? Or bring attention to the many groups and causes that are desperately trying to raise awareness of how much average people with TBIs are suffering with little or no local, state or federal aid?

My second issue is that professional athletes are getting paid a lot of money and know full well the risks they take of getting injured in their line of work. In contrast, most average people with TBIs are injured by true accidents caused through no fault of their own or, worse, at the hands of violence.

Furthermore, because these professional athletes are such valuable assets to their teams, they get the best possible care from the moment they are injured. This contrasts dramatically with those of us who are looked over carelessly by emergency room staff and/or can't find a good physician to treat our problems properly.

This leads to my third issue. While professional althetes are getting hurt in the field and receiving the best possible care and loads of compassionate media coverage, the injustices suffered by military personnel who are hurt in the line of DUTY go virtually unnoticed. So many of these brave men and women who are fighting for our country are suffering terrible TBIs and then getting shafted by the military and the government. They are receiving inadequate care and are either being left to their own devices or are told they are "all better" and need to get back into the field. I don't see that happening to professional athletes.

Finally (although I could go on forever), there's the issue of money. As we all know, medical care (never mind the BEST medical care) is extremely expensive. Unlike professional athletes, politicians and celebrities, we don't have the bottomless pockets to afford the care we need when we can get it. If we're lucky enough to find good doctors (which I have fortunately been able to find, but many people I know haven't), it can put a terrible strain on our finances to pay for the care we need, even if we have insurance.

For many of us, our injuries have rendered us either incapable of doing or extremely difficult to do the work we once did to earn a living. In some cases, people lose their insurance when they lose their job. Some keep their insurance through a spouse or are able to get Medicaid, but that doesn't necessarily solve things.

I know from experience that living on one income makes it extremely difficult for us to come up with enough money to pay for all my medical expenses. I have had to force myself into doing work that causes me more pain and anxiety just to make sure we don't go under.

Filing for disability is always an option, but from what I understand, it is quite an ordeal in itself and can be a degrading and painful process, especially for people already in pain and confusion. I have considered filing for disability many times, but when I hear horror stories I shy away. In my case, I want to be independent and I would rather have someone or some organization helping me to make a living in a way that works for me and my existing limitations. But such help is hard to find.

So while wealthy athletes and celebrities are able to afford excellent care, and politicians can utilize the increible medical plans they are privileged to have, the rest of us are left to fend for ourselves more often than not.

It's shameful.

And it makes me angry. Angry that because we're not rich or famous we are ignored and forgotten. It's as if our TBIs aren't as important because we're not "important" in the most superficial sense.

We ARE important! And our TBIs deserve equal attention and care to those who already get plenty of attention just for being who they are.

The news media, our governments and the world need to know that we are here and we're suffering because THEY are not paying attention to us. They're too busy being upset over the professional football player who's probably going to sustain a head injury during the Super Bowl in a few hours from now.

Meanwhile, those of us with TBIs will be watching and feeling his pain because we know what it's like. And we'll feel badly for him, too, and hope that he gets good medical help. But I know I personally will still be angry that HE is who everyone will be worried about while there are millions of us out there with TBIs about whom no one seems to give a damn.

Sorry, but it's true.

Traumatic Brain Injury and the Grieving Process

2011-01-29T09:33:00.000-06:00

I remember learning about the seven stages of grief in my high school psychology class, but for some reason I had only ever really associated it with the grief you feel after the death of a loved one. My traumatic brain injury and my biofeedback therapist have taught me otherwise.

As Katie, my therapist, said, "When you have a brain injury, it can feel like a part of you has died."

She told me this a week ago while I was sitting in her office bawling my eyes out over the realizations that I am in many ways not the same person I once was. For more than a week, I had been stewing over my apparent inability to do things I once found very easy and mundane.

Pushing myself to do things I hadn't done since before my accident, I kept running into walls. I couldn't concentrate or focus. My mind drifted off-task and I struggled to remember what exactly I was trying to do. I felt like I was trying to put together a puzzle, except the puzzle had pieces from 10 different puzzles all mixed together and nothing fit. The more I ran up against my limitations, the more frustrated and angry I became until I was unable to do anything at all.

I beat my pillow. I cried. I took naps. I went outside to get fresh air. And then I'd try to go back to what I was doing with what I believed was a "clear perspective," only to find myself going through the same process all over again. All of this put a fear in me like nothing I've felt before. The fear that I was "disabled."

Through all of this, I kept thinking of the neuropsychologial evaluation I underwent last summer. The results were not good. It showed cognitive impairment, memory problems, depression and severe anxiety, among other things. At the time, I had no problem agreeing with the anxiety since I lived with severe anxiety, panic attacks and vertigo nearly every day. The depression was slightly more difficult to swallow because I felt that I had every reason to feel sad about my situation. But after discussions with my doctor and some very caring people, I accepted the fact that I needed to take an anti-depressant that would also help with my anxiety issues.

The memory problems were evident to me as well, but I refused to believe I had cognitive impairments. I told myself that the test results must be overblown somehow and I refused to accept that these would cause me real difficulties.

I wasn't working at the time due to the pain, an almost constant need to sleep or lay around like a vegetable, and the never-ending round of doctors appointments, various therapies, etc. Every now and then, I would do some small easy project and I would think to myself, "See, I'm not impaired!" I would garden to get fresh air and exercise. I gradually started doing more socializing despite the pain and anxiety; putting on a happy face because my ego wouldn't allow me to be the party-pooper or risk having people think of me as having problems.

Basically, I was in the denial stage of my own personal grieving process.

In the fall, I was asked to write a couple of articles for a publication I had written for in the past. I was worried because I hadn't done much writing since my accident, and I was worried that I had "lost it." Fortunately, the articles were on a subject I knew well and had written about many times before. It took me a little longer to write than it had in the past, but the results were deemed by all to be very good. To me, this only further proved that I was right about the neuropsych evaluation being wrong, even though other tests taken after that showed similar results.

Denial.

With the new year and this blog started, I felt empowered. I was ready to take on the world. Instead, I only bit off a lot more than I could chew. As I started getting back to my work, I took on more challenging projects, sure in the knowledge that I had done them easily before and could do them easily again.

Enter another phase of the grieving process: Anger.

You may know that the seven stages of grief do not necessarily go in a specific order for each person, even though they are categorized numerically. For me, I had started my grieving process right after my TBI with #2: Pain and Guilt. I then jumped right on over to #4: Depression, Reflection and Loneliness. As you've already seen, #3: Anger and Bargaining, is the stage I'm in now.

So, as I sat in my biofeedback therapy session last week, crying my eyes out over my anger and frustration, Katie said something that surprised me. "This is the strongest I've ever seen you," she said, as I blew my nose into my 90th tissue. Since this is a family-friendly site, I can't share with you the thought that came to my mind. Instead, I asked Katie how she could possibly say that I was strong when I was crying like a baby.

"Denial is easy," she responded. "Dealing with reality is hard. You're dealing with reality right now."

She was right, but it only made me cry more because I thought that I had been strong for more than a year; putting on a good face, brushing aside medical opinions of my condition, and generally pretending like everything was A-okay.

In reality, all I had been doing for the past year was hiding from and avoiding the truth, and trying to convince myself and everyone else that I was still the same as I always had been. Realizing that I wasn't and that I couldn't hide it anymore was making me not merely angry, but furious, especially when I realized that the whole facade had been doing me no favors.

In order to recover from grief, you have to go through the whole grieving process. If you don't, you're only hurting yourself. And I was by spending more than a year in denial.

I admit I'm still angry, but that's okay. Right now my job is to face my limitations and find ways to work around them, find new outlets and new abilities. This process will help me get to the next stages of the grieving process - #5: The Upward Turn, and #6: Reconstruction and Working Through. I like to think I'm already getting to those stages, but only time will tell.

The ultimate goal, of course, is #7: Acceptance and Hope. I believe I will get there when the time is right.

UNITY for TBI Survivors and Caregivers!

2011-01-24T14:30:00.000-06:00

This past weekend was an emotional roller-coaster for me. Not just because of the side-effects of my TBI, but because I took action and was beaten down all in a matter of three days.

A couple of weeks ago, I was on Brain Injury Radio with Craig Sicilia to share my story and hear those of other TBI survivors. As the host, Craig's message was one of UNITY among TBI survivors, and my husband and I couldn't have agreed with him more whole-heartedly. Craig reminded us that unity must start with each TBI survivor, in our own communities, and on behalf of each other.

His words were inspiring to me, and I was determined to become an advocate for myself and other TBI survivors, but I didn't know where to start. Writing this blog is one thing, but actually teaming up with other TBI survivors to give support and raise awareness is what I knew would be the next step.

Late last week, my inspiration on how to start on this next step was given to me by my dear friend, Anaperla Aureoles. She sent me a message saying that she had written to Presdient Obama to share her TBI story. She got a letter back and shared that with me too. She told me that her dream is to have 1,000 TBI survivors share their stories with President Obama. She asked me to help her achieve this dream and I knew this was my first chance to do something proactive.

On Saturday, I started a Cause on Facebook called "Ana's Dream: 1000 TBI Survival Stories to President Obama and Politicians." The goal is to share enough stories with the President and other politicians that maybe they will take notice that there are a lot of us out there and we need help, awareness and understanding. At this writing, we already have 50 members of this cause! Anyone can join, share, participate and donate money to the charity I've chosen for this cause, The Brain Injury Association of America (BIA).

I am thrilled with the response so far. There are so many good people out there, and many who don't have TBIs have joined as well, including my always-supportive and loving husband, David. In a way though, even those who do not have a TBI themselves, but who love and care for those who do, have experienced TBIs in a different way. They see our struggles, our ups and downs, our pain and frustration, and everything else that comes along with a TBI. If they have weathered the storm with us, they too are TBI survivors in a way. They have survived our TBIs with us and have given us love and support. Their stories are just as important as ours.

In my enthusiasm for this new cause, I spread the word among the many TBI survivors and caregivers who I have met on Facebook and in various online TBI support groups. So many expressed support and encouragement, and I felt on top of the world for starting a movement among so many wonderful similar movements for TBI awareness and support.

And then my bubble was burst by a single person. That's the problem with bubbles, they are very fragile.

This person, a leader of two Facebook brain injury support groups, excoriated me in no uncertain terms for what I was doing. Not just for creating a Cause, but for writing my story. She told me directly that I was "new at this" and implied that I had no right to do what I was doing and should support her causes exclusively. She also defamed the BIA because of her personal experiences. She discouraged me from having anything to do with them.

This all happened Saturday night. Although she reduced me to tears, I made my peace with her on her group, telling her that I respected her right to her opinions and that I didn't want division or disagreement, and left it at that. But she was determined to "get back" at me somehow, and this morning I awoke to a message from her saying I could not longer be a part of her support groups because of what I was doing.

All I was doing was trying to share my story and help others. I was never rude or disrespectful to her or anyone else.

I will not be bullied and browbeaten. I may be "new at this," but I am not a subservient drone who deserves to be treated in that way. Nor should any other TBI survivor or anyone else for that matter! I told her so in my response and said "good riddance!" to her and her hurtful and spiteful behavior.

This does not change my ideal of unity for TBI survivors and caregivers. I will do what I believe is right and I will not challenge the rights of others to express their opinions and take actions they believe in on behalf of TBI.

I am sorry for this person and hope she realizes that what she is doing is hurtful and divisive. I will continue to admire her for her outspokenness on behalf of brain injury survivors, but I will not be treated as if I am a silly child who knows not what she does. There are too many good people out there who want UNITY and want to share their causes, whatever they may be, and tell their stories. I say more power to those people.

This person does not realize it, but she has just made me stronger and more determined than ever. She may have hurt me deeply and cut me off from much-needed support, but I will find it elsewhere. And I will move on in UNITY!

I am working on writing about Ana because I want everyone to know her and her inspiring story, and I will post it on this blog very soon. Because of her multiple TBIs, it is very difficult for her to share it herself. I have committed to her that I will be her voice, just as she has been my inspiration.

Thank you to everyone who has supported me and given me love and encouragement. I have never met many of you personally, but I love you for what you have given and meant to me, which is unconditional kindness and support.

To the Pain

2011-01-19T17:48:00.001-06:00

I have always loved the movie, "The Princess Bride." I've seen it so many times I can recite the lines even when I'm not watching the movie. But since my traumatic brain injury, there is a scene with some particular lines that come to mind quite frequently.

For those of you not familiar with the movie, there is a scene where the antagonist, Prince Humperdinck, and the protagonist, Westley, are about to have a confrontation. The Prince raises his sword to Westley and states, "To the death!"

Westley responds, "No. To the pain."

He explains to the baffled Prince Humperdinck: "To the pain means the first thing you will lose will be your feet below the ankles. Then your hands at the wrists. Next your nose." The Prince responds with contempt, "And then my tongue I suppose?"

Westley replies: "I wasn't finished. The next thing you will lose will be your left eye followed by your right." The Prince, eager for a sword fight, says, "And then my ears, I understand let's get on with it."

Without a pause, Westley responds forcefully, "WRONG. Your ears you keep and I'll tell you why. So that every shriek of every child at seeing your hideousness will be yours to cherish. Every babe that weeps at your approach, every woman who cries out, 'Dear God! What is that thing?' will echo in your perfect ears. That is what to the pain means. It means I leave you in anguish, wallowing in freakish misery forever."

Prince Humperdinck drops his sword in surrender, giving in to his own cowardice. He's not afraid to die, he's afraid of the pain and suffering Westley threatens to leave him with for the rest of his life.

I realize this is a somewhat unorthodox way of opening this blog post, but I too am afraid of living my life "in anguish, wallowing in freakish misery forever." That is what "to the pain" means to me, too. And it is more or less what I have to deal with every day. I may have my limbs, my eyes, etc., and I may not look "hideous" (well, there are times I'm sure I do), but I live with daily anguish: physically, mentally and emotionally.

Every person with a traumatic brain injury manifests pain differently. For me, my physical pain comes in several forms: constant headaches caused by post-concussive syndrome, shooting pains through my skull, neck and shoulders caused by several types of neuralgia, and a strange tingling sensation in my skull called paresthesia. These pains are often made worse by anxiety and vertigo, by stress or depression, and by various stimuli around me.

There are days when I'm non-functional, although I've also become somewhat inured to the pain, and with the help of medications, treatments and therapies, I am often able to manage quite well despite the pain. But it's ever-present, and each day - each hour even - is a crap-shoot. Will I have manageable pain or debilitating pain? This makes "normal" life and everyday activities very difficult to plan, manage and follow-through.

Before my head injury, I had chronic migraines. I remember thinking to myself, "Nothing can hurt worse than this." Since my accident, my migraine pain has been subsumed by all the other pain. There have been times when I've been in so much pain and have taken the maximum amount of every medication I'm prescribed that I will take my migraine medication in desperation, but it does nothing. Times like these, I think my only option is to go to the ER, but then I recall my bad experience there when I had my accident and I choose instead to "wallow in my freakish misery" alone within myself.

I realize I've come a long way in the last year, but many times I feel I take one step forward and two steps back. I am extremely grateful for my wonderful neurologist, Dr. Brian Sorin, who specializes in my kind of pain. He treats me with medications, guides me to therapies, and motivates me to stay strong and not give in. He is the one who encouraged me to start writing my story.

Last year, he started me on Alzheimer's medication and began giving me monthly "nerve block" injections, which contain a lidocaine-type anesthetic that goes directly into the nerves above my eyes, at the base of my skull, and in my neck, shoulders and back. I get these about once a month, and they definitely help ease the pain and improve the efficacy of my medications.

He recently also started giving me Dysport injections (Botox) that target the muscles around the nerves to ease the tension and pain in various areas (although I can't seem to convince him to "miss" his target every now and then to address the lines in my forehead - drat!). I got my first Dysport injections in December and will have them every three months.

Between these two treatments, I'm seeing improvements, but everything takes time, and the brain is one of the slowest muscles to heal. More than a year after my injury, my brain is still swollen, which is part of post-concussive syndrome, and the shots can do nothing for that pain. Only time and healing will change that.

I'm reading an excellent book right now called "The Pain Chronicles" by Melanie Thernstrom. It is powerful, informative and emotional reading for me, but I am learning a great deal about pain through her own personal ordeal with it and her amazing ability to weave history, science, various forms of treatments, and different schools of thoughts on pain into a wonderful narrative. The chapters are mercifully short and I can only read a few chapters at a time because I invariably end up in tears. But they are tears of understanding, realization and acceptance that I must deal with and get through, just as I have to do with my pain.

I plan to write more about pain on this blog in the future and hopefully - with Ms. Thernstrom's permission - cite passages from her book that have been especially meaningful and helpful to me. But that is for another day.

I will finish today's post by saying that "The Princess Bride" has a happy ending for Westley and his true love, despite the struggles they went through to achieve their happiness. Prince Humperdinck is left to live his life in shame and cowardice. I don't necessarily believe that every story has a happy ending, but I refuse to be a "Prince Humperdinck." I will get through this with as much dignity and courage as I can, and strive to not live my life "to the pain."

Rejoicing Success, Recognizing Limitations

2011-01-15T14:08:00.000-06:00

This past week has been an extremely confusing one. I started out the week with a small victory and spent the rest of the week in complete befuddlement, confusion, depression and pain. Somehow, the fact that it is Saturday is a great relief to me. I think the contradictions of the week sent me into a tailspin, and yet I woke up this morning feeling somewhat reborn.

As many of you who read this blog or know my situation are aware, I was improperly diagnosed and mistreated on the day of my head injury at The Medical Center of Plano's ER. If you don't, you can read all about it in my post, "Adding Insult to Injury at the Emergency Room."

On Monday, January 10, 2010, more than a year after that debacle, David and I finally had our chance to go face-to-face with the hospital staff and confront them directly with our grievances.

Going into the meeting, we were both very afraid that we would encounter a hostile and defensive group of people who wanted to justify their actions at all costs. To our surprise, what we found was a very humble group of individuals who listened to everything we had to say without interruption, argument or excuses. There wasn't even a hospital lawyer present, which was very refreshing.

As we said our peace, they apologized several times and told us that this incident has caused them to make a number of policy changes to prevent something like this happening again. To start, the radiology tech who made me move myself twice "is no longer with the hospital." Furthermore, there is now a strict policy that no patient in a C Collar (Cervical Collar or neck brace) is allowed to move themselves at all (may I interject, "DUH!").

Regarding the misdiagnosis: apparently, when I was at their ER, they did not have a qualified radiologist on staff to read my scan, so the severity of my injury was clearly missed. They now have a 24/7 radiologist on staff to prevent that from happening again. They also recognized that they didn't listen closely enough to my family when they told the hospital staff there was a loud crack when my head hit the floor, and it wasn't the floor.

They also admitted that they did not give us thorough discharge instructions on what red flags to look for after I went home. Nor did they follow-up with us to see how I was doing. Had they done so, and they learned that I was having swelling in my forehead and eye, and I couldn't keep any of my medicine down due to the severe nausea and vomiting (despite strong medicine to prevent that), they told us they would have had me return to the hospital immediately. Now, they promised that they call patients within 24 to 48 hours to follow-up.

Where they fell short was in not admitting that if I had a severe concussion - what the attending physician said was "the worst concussion he had seen in ten years" - they should have admitted me to the hospital to do more scans and have a neurologist assigned to me. They said that because I was "speaking clearly" they didn't think I was in need of further evaluation. This is disturbing in so many ways, particularly because "speaking clearly" does NOT rule out a serious brain injury. It also doesn't mean I didn't fracture my skull and sustain hemorrhaging, and they as medical professionals should have known this.

When we asked them why they didn't do a CT scan with contrast, which would have identified the skull fracture, they said it was because they were concerned that the contrast would obscure any hemmorhaging. And yet, if they thought there was brain hemorrhaging - which there was - we asked them why they didn't do an MRI. The response: "That's not an emergency scan." Well, just another reason why they should have admitted me to the hospital to monitor my injury and do more scans, which is what my doctors have told us should have been done.

So although we left the hospital on Monday feeling relieved and grateful that measures were in place to insure that someone else wouldn't have to go through what I did at that particular hospital, I still left feeling that there is just too little real understanding of traumatic brain injuries by emergency medical personnel, or even in general.

I guess this is what partly started my week off wrong. I still felt frustrated, and I certainly felt drained in every way. Enter recognizing my limitations... I just want to be "normal" in every way, and I want to be the "old Tori" who could overcome any challenge, confront every fear, and achieve everything I set my mind to do - all with relative ease and comfort. The problem is, I'm the "new Tori" with limitations that frustrate the hell out of me. In retaliation, I fight back (which is good) and set high expectations for myself (which, I'm finding out, is not good because they are always unrealistic).

When I fail to meet those expectations, I feel like a failure. I get depressed, frustrated, and angry at myself. It quickly turns into a viscous spiral. My frustration, depression and anger make it even more difficult to get even the easiest task done, and I feel physically worse to boot. The result is a week like this one.

I have to keep reminding myself that although I do have limitations, they do not define me; just as my self-perceived old "unlimited Tori" did not define me. I know that I have to take smaller steps and make daily goals that are achievable, and not get so frustrated and angry with myself if I fall short. I need to have the same compassion and patience with myself that I would for others. I could go on and on about what I need to do, but - honestly - that would be the "old Tori" pushing for too much too fast. I need to deal with these things and move on to the rest when I'm ready. But! One last thing I need to do (and this one is for David and Katie) is stop being so STUBBORN!

Happy weekend, everyone. And prayers and good wishes for Rep. Gabrielle Giffords and her family. Though it is a terrible tragedy, I know that her situation has already brought more attention to traumatic brain injury. For that and her survival, I am grateful. I hope she comes out of this stronger than before and is an advocate for this little understood aspect of medicine. Go Gabby!

Frustration, Nerves and Memory

2011-01-06T15:55:00.000-06:00

I write today's post partly at the request of my Mother, and partly out of the sheer frustration I feel right now. The frustration is over everything and nothing. My nerves are shot and I'm feeling like I need yellow sticky notes pasted all over me to remind me what I'm supposed to be doing.

The sticky notes part of the equation - not the frustration - is where my Mother comes in the picture. After reading one of my recent posts where I talked about my memory issues, she reminded me that most people would not understand how my memory problems are any different from what most people go through daily. After all, everyone has those moments where they forget what they were about to do, can't remember a name, or just can't recall a conversation. So when I talk about my own memory problems as they relate to my head injury, it may be difficult for people to disassociate everyday memory lapses with traumatic brain injury memory issues.

From my point of view, it's incredibly hard to articulate exactly what I'm going through in terms of my memory problems. My two guest bloggers, Zach and Shana, have shared some of their experiences with memory issues, and it's helpful to read their descriptions because each person's experience after a head injury is so different.

There's no doubt in my mind that my memory has improved in the year since I sustained my skull fracture and concussion, thanks in part to the Alzheimer's medication I'm taking. Early on, I couldn't remember a lot of anything, short or long term, and was frequently confused. Even several months after the injury, David and I would watch TV and he would say, "Oh, we've seen this episode before," or something like that, and I would have absolutely no recollection of it. To this day, I don't remember a lot of the details of the trip we took to New Orleans six or so weeks after my injury.

This is not to say I haven't retained a lot of memories and things I knew before the injury. It's just that sometimes things are a blank and I really have to work hard to try and find those "files" in my head. Sometimes it's like I'm getting a message on a computer saying, "File Not Found."

What's extremely frustrating about this is that many things I remember perfectly clearly, and I just can't figure out why some things come so easily and others are slow to process, or don't process at all. As someone who previously prided herself for a good memory that sometimes produced crystal-clear images in my head, this is exasperating. That exasperation often leads to exacerbation of my already frayed nerves, increasing my anxiety level exponentially. By my nature, I'm a very self-critical person and have always been hard on myself for my faults. Even though I realize I can't control many of these memory issues, I still tend to beat myself up over them. A vicious cycle, to say the least.

Aside from forgetting events, experiences, words or what I was about to do - just to name a few - there are the ridiculous memory lapses that are almost funny. Rather, I try to think of them as funny so I don't get upset about them. Fortunately, many people are patient. Case in point, one night last summer, I went out with a group of girls. For some reason, I kept calling one of them Karen, even though I knew her name was Janet. Each time I called her Karen, my friends would gently say, "Tori, it's Janet," and I would respond, laughing, "Oh, right, sorry!" Ten minutes later, she would be Karen again. The best I can say is that at least I chose an alternate name for her that had the same number of letters as her real name.

Around people who don't know me or my circumstances well, I often feel like an idiot when I'm telling a story or talking and I have to ask my husband to fill in the blanks for me. Names, places, dates, whatever, of things that I should know like the back of my hand.

The many tests I have to take in the course of my medical treatment reflect these problems very clearly, and it's painful to see how bad my short-term memory is on paper, let alone in real life. On the flip side, as bad as it is in those tests, sometimes I'm amazed that I can manage to function as well as I do much of the time. Or at least at how well I think I'm able to mask my deficiencies.

This certainly applies to my work life, which has gradually become more active. As a public relations professional, I have always been able to flip a switch into what I call "client mode," where I become detached from the non-business side of me and wear a highly professional and polished mask (not to say I'm crass and horrible the rest of the time, but business is business, after all). I can still do this, thank goodness, but it takes huge amounts of energy and concentration, and as soon as I flip off the switch, I'm exhausted and feel virtually brain dead. It's not something I can maintain for long periods, and if I have to, it takes me at least a day to recover.

This all leads back to why I'm frustrated today. Over the holidays, I had a bad cold, which is still lingering in terms of congestion and exhaustion. Add on post-holiday-getting-back-to-reality syndrome and mix with my "new normal" post-head injury symptoms and I feel like a James Bond martini - shaken, not stirred.

It's in this state of mind that I rant to myself about the ridiculous nature of everyday things. Like why does the Alzheimer's medication I'm taking require me to remember to take it twice a day? Even with David writing "Take AM and PM" on the cap, I still have a hard time remembering if I took it. I probably did, but what if I didn't? Should I take it again just in case? No, I probably already took it. Or did I? For Heaven's sakes, it's for people with MEMORY issues! How are we supposed to remember what we already forgot?

On this note, I take my leave because I think you understand at this point why I titled this post, "Frustration, Nerves and Memory." (Mom: Did I forget anything?)

A Year in the Life of My Head Injury

2011-01-03T15:26:00.001-06:00

I write a year "in the life of my head injury" as opposed to a year "in my life" because my head injury was my life in 2010. I'm hoping this year will belong more to me than to my injury.

To start, I did reclaim New Year's Eve this year. I spent it with my wonderful husband and great friends. At midnight, I cried and kissed and held my husband as hard as I could. In a great crowd with balloons falling all around us and music blaring, it was just the two of us for a moment. I felt so grateful to him and so happy that the year that started off so horribly was over. And I couldn't help but remember what was happening a year ago that night: unbearable pain, complete chaos, and utter emotional and mental turmoil.

In pain and bitterness, my brain like scrambled eggs, I was completely emotionally distraught. For no reason, I got mad and started screaming at David - about what I don't remember. I then launched into uncontrollable crying, the kind of crying you do when you're a kid... you can't stop, you're gulping for air, heaving violently, going through boxes of tissues. Cloistering myself in the guest room, I laid in bed feeling like I would die from the pain, fear and frustration.

Sometime past midnight, as 2010 was just beginning, I remember looking at the clock and thinking as I drifted to sleep that maybe I wouldn't wake up. Hoping, in a way. Not that I was suicidal, thank goodness (with all the pills at my bedside, that would have been a tragic mix). I just felt it would be merciful if it was my time because I didn't know how I could go on like that. It's scary now to think about how ready and willing I was to just give up and die.

So now it's 2011 and I still have a long way to go, but I'm grateful to be alive and fighting this. I didn't make any real New Year's resolutions. What's the point when getting through each day is a resolution?

But I do intend to do a great many things this year that I didn't last year. For starters, I'm going to read all the books I deemed too painful to read last year. Books about pain, injury and recovery. My Mom gave me a book last year, "The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering" by Melanie Thernstrom, and the title alone scared me so much I couldn't even read the inside cover. For Christmas, I received several books, including "The Mind's Eye" by Oliver Sacks. I'm determined to read these, no matter how difficult and emotional.

I also intend to resolve my issues with The Medical Center of Plano. I got a call this morning confirming a meeting with them on January 10. For the first time since my bad encounter at their ER, David and I will sit face-to-face with the attending doctor, the radiologist, the heads of the ER and radiology department, and others to confront them directly for misdiagnosing and mistreating me. I'm scared to death. I will go equipped with David, my notes, CT scans and MRIs, a big box of tissues, and a whole lot to say.

Finally, I will continue doing the things I have been doing. I'll continue my progressive medical treatments and also my self-healing through activities like belly dancing (which has been great for rebuilding my strength, balance and coordination) and writing this blog.

I don't know what 2011 has in store for me, but I do know that I will not let this be the year that my head injury controls me. As far as I'm concerned, I'm back in charge now.

Guest Post: Shana’s Journey through Four Concussions

2010-12-31T10:36:00.000-06:00

Through my blogging on my head injury, I learned that an old school friend of mine has suffered four concussions – the first at age 2, the most recent just a few months ago. I never knew this, and am grateful to her for letting me share her story here.

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Shana’s Journey through Four Concussions

I got my first concussion at age 2. I remember it being my birthday and I wanted a bed but I was too young to know that my first bed and bedroom suite were to be delivered later that week. I got mad at mom for putting me in my crib that day, so I decided to climb out but I failed. I fell head-first onto a hard floor. I remember a sharp pain and nothing else until almost a year later at age 3.

My second concussion was when I was about 22 years old when my friends’ car hit me in the head. I was getting in and he accidentally put the car in reverse then in park really fast and it caused a jerking motion of the car. The metal part above the door smacked me in the head knocking me down. I went to the hospital and got diagnosed with the concussion.

My third concussion was in 2009 when I was hiking and jumping across a creek. I did not see the sideways hanging tree trunk and my head smacked it in a high speed jump. I hit it cartoon style and if I was a cartoon, there would have been stars and birds swarming around my head.

My fourth concussion was in October 2010 when a little 4-year-old boy accidentally slammed a solid wooden door on my head near my eye.

With four concussions, I have experienced mild brain damage that is likely permanent. This has affected my short term memory but not the long term memory. It is extremely difficult to learn anything new. New jobs are very hard and I am often let go in the trial period for “not getting it” fast enough.

When I meet new people, I often do not remember their names until I become rather good friends with them. This causes some people to think I don't like them and that is so far from the truth. I already had a learning curve all my life but it's only worse from the head trauma.

My head injuries have also affected my motor skills, which make me clumsy. Sometimes I slur when I talk or say a word wrong. That, too, is from all the concussions. I also have tinnitus that started sometime within the last 2 years. No one has figured out why it happens when my ears look normal on an MRI.

I used to see only half moon out of my right eye and the rest of it was blind. I had to close the right eye to even walk and see straight. My vision got better within 1.5 years of chiropractic care. Before that, I had to wear glasses, but I no longer do. My thumb used to go paralyzed for no obvious reason and that stopped too. Both of these were cured with chiropractic.

I am thankful though, that I can see well and speak well with only the occasional slur from the brain damage. Otherwise, I am almost normal.

-Shana

Guest Post: Indecision, by Zach Gauvin

2010-12-30T13:46:00.001-06:00

Through my blogging and quest to find other people and groups with brain and head injuries, I came across a great group and blog by Zach Gauvin called Brain Injury Support Group. I asked Zach to share a post with me for my blog and here it is. Thank you so much, Zach!

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Indecision
by Zach Gauvin

As a result of my brain injury I have an extremely hard time on deciding things. Whether that be deciding where I want to go eat, trying to decide the between things or what to write about in my blog. It drives me insane and sometimes I stand in the same space for minutes trying to decide what it was that I am trying to do.

I’ll get up off the couch, go to the cabinet, open the doors and just stare at the food, for minutes. I know I want something to eat but I just don’t know what it should be. Chips or a candy bar? It’s almost like whatever I choose could mean life or death and it has to be the right or else.

I don’t get why I feel this way. I know it’s not life or death but I still treat it as though it is. I think I do this (unintentionally) because I want to make it a great experience. I know, you’re probably saying “easy Zach, it’s only food” but to me I think it’s subconsciously more.

I believe that it is subconsciously something more because after going through what I have been through (a near death experience) I want to make sure every last thing counts. So, I want it to be great and I want it to be amazing because I feel like life could be over in a blink of an eye.

It is a burden to carry because I know that I could just get something else or that it really doesn’t matter what I choose because they all go to the same spot (my stomach) and they all satisfy my hunger. But still I stare at the array of snacks in my cabinet not able to decide.

So, I tell myself “what’s going to happen if I choose this one?” to allow myself to get over the hump and actually pick something. This helps me hurry up and make a decision with whatever it is that I am choosing.

It helps me choose because I can’t think of anything bad that will happen if I choose whatever item that I have selected. “I’m not going to die, No one will be hurt, and so what’s the big deal if I choose this one?”

By Zach Gauvin - My blog: http://supportforbraininjuries.wordpress.com/

Brain Injury Support Group

It’s something that we, as brain injury survivors, must live with. Excruciating headaches or migraines that just won’t go away. The pain is unlike anything that we have ever felt. These headaches occur when ever I concentrate too hard on anything, whenever I get excited or even when I get confused.

Am I Strong or an Empty Shell?

2010-12-29T12:50:00.001-06:00

I tried to write a post last night, but everything in me conspired against my plan. I sat at the computer and was frozen in every way. It was a bad night.

Still recovering from a viral infection, I woke up early yesterday morning to go to the doctor and get my nerve-block injections. These involve my neurologist injecting a lidocaine-type medication directly into the nerves in my forehead and neck that literally block the nerve pain that cause the various forms of neuralgia I suffer as a result of the head injury. As painful as they sound, they really aren't that bad, and the effect after a day or two is spectacular.

Yesterday I only had around eight of these shots; far fewer than the normal 15 to 20 I usually get. This is because about a month ago, the same neurologist started giving me Dysport (botox) injections, which target the muscles around the nerve to help alleviate the pain. The combination of the Dysport and nerve-block injections has done a great deal to improve the intensity and duration of my neuralgia pain.

Unfortunately, the shots can do nothing for the pain from the post-concussive syndrome. For that, I take pain medications and use biofeedback techniques to combat the physical reactions to the pain that make it worse. But I digress... back to yesterday.

After a short time at home, I went off to biofeedback therapy and spent part of the time talking about the emotions of the anniversary of my head injury and the holidays, and the rest of the time practicing my breathing techniques. I felt pretty good when I left, but everything was already starting to catch up with me.

I went home and spent the next few hours going over 2010 financial records - a depressing thing to do when you haven't made a dime all year, but have racked up thousands of dollars in medical bills. By the early evening, I felt dead inside. An empty shell, devoid of all feeling except for self-pity, pain, anxiety and a dim outlook. What made it worse was that I knew I shouldn't feel that way. For all intents and purposes, it was a productive day.

I try to be positive and move on, but there are times that nothing seems to work. Today I'm feeling the residual of all this, and it's days like this that I ask myself, "Am I really as strong as people tell me I am, or is that just another mask hiding an empty shell?"

All throughout my head injury and recovery, people have told me that I'm a strong woman. I imagine they have said it either to help me get through the bad times or to give me comfort and reassurance during my good times. I don't believe these have ever been platitudes. I take these comments as genuine and I greatly appreciate them. They actually make me feel like I AM strong.

Indeed, I was raised by parents who empowered me to be a strong and tenacious individual, so the result is that part of me believes I am strong. I even believe that the evidence of this is the speed of my recovery, which has surpassed all my doctors' expectations.

I also know, however, that through this ordeal, I haven't always felt this way. Last night and today being Exhibit A. In fact, I've succumbed to pain, fear and depression just as often as I've been strong and fought, and at times I've just wanted to crawl into a hole and let nature reclaim me.

I realize that many of those feelings and reactions have been beyond my control, just like the symptoms of pain and vertigo. It's just that when you like to think of yourself as strong, but your brain is sending only negative signals, you lose yourself.

This is maybe one of the less understood elements of a head or brain injury. A severe blow to the head literally rattles the brain, confusing nerves, hormones, chemical balances, etc. So although we tend to think of only the pain or physical symptoms of such an injury, there are many more unseen emotional and mental symptoms that are difficult to come to terms with.

When I first learned after a neuropsychological evaluation that I should be taking an anti-anxiety/anti-depressant medication, I was crushed. To me this meant I was not doing a good job at healing myself. But after a long talk with my doctor and many good friends, I understood that the anxiety and depression I felt were beyond my control. I relented and I know that I am better for this medication.

Similarly, when my very progressive neurologist prescribed Alzheimer's medication, I was floored. With his kind bedside manner, he quickly assured me I didn't have Alzheimer's. But the symptoms of severe post-concussive syndrome - pain, memory loss, etc. - are very similar to those of Alzheimer's. Now, when I do something forgetful or silly, friends will sometimes hear me say jokingly, "Oh, guess I forgot to take my Alzheimer's medication." The truth is, I do take it - twice a day - and it helps, but it doesn't solve the problems completely. And though I joke, it hurts me inside when I realize how stupid or forgetful I've been, just like when I do all I can to combat the pain and other symptoms and I end up feeling dejected and depressed.

No medicine or treatment can make my symptoms go away completely. Even time may not make them go away completely. Ideally, it's my response to the symptoms that has to change, but even my responses are out of my control to a great extent. I can self-sooth, try to motivate and cheer myself, and remind myself all day long that I am a strong woman and I will get through this, but that doesn't always take away that feeling that I am just an empty, cracked shell.

I just have to remember the proverb, "This too shall pass." And though, as I've said before, I'm not a religious person, I have to repeat to myself the hymn by Mary Baker Eddy my father reminded me of recently:

"Shepherd, show me how to go
O'er the hillside steep,
How to gather, how to sow,
How to feed Thy sheep.
I will listen for Thy voice,
Lest my footsteps stray;
I will follow and rejoice
All the rugged way."

Connecting with Other Head and Brain Injury Survivors

2010-12-27T11:00:00.000-06:00

Starting this blog was difficult. I resisted. I demurred. I made excuses. Writing the first post was emotionally exhausting, and I didn't know if I could handle writing more. But the more I wrote, the more cathartic and empowering it became.

As responses of encouragement and love came in, I realized that I wasn't just doing this for myself, but also for others. Some of the responses from people I knew were surprising; they had also experienced head injuries. When I started seeking out other sites and groups dedicated to head and brain injuries, I was amazed at the resources and support out there.

Starting my blog was the impetus for all this new understanding. Previously, I had tentatively researched online information about specific aspects of my own injury, like occipital skull fractures, subdural hemorrhaging and anosmia. Part of my hesitancy in seeking out more information was fear. I was afraid of seeing myself mirrored in this information. I didn't want to know what was ahead for me. Now that information is comforting and supportive.

This is not to say that I've lost all fear, but seeing things for what they are and knowing that others have been there is a great help in diminishing that fear.

Early on in my recovery, I had a face-to-face confrontation with both the best and worst of the effects of a head injury and it shook me to the core. Sometime this past spring while I was doing vestibular therapy, my mother and I were in the waiting room and started talking with a man also waiting on an appointment. It wasn't long into our conversation when we realized this man was coping with some serious repercussions from a head injury far more serious than my own.

Until that day, most of the people I had encountered at the rehab clinic were doing physical therapy for injuries like broken legs or hip replacements, and it made me feel out of place. This man changed all that. He explained how he remembered being home alone cooking and then everything went blank. His wife returned home to find him on the floor unconscious, bleeding profusely from the head, food burning on the stove. He spent nearly a year in the hospital, racking up a million dollars in medical bills. He had been in therapy for quite some time, although we could clearly tell that he still had many issues he was working through. Nevertheless, he was driving himself to therapy and seemed to be quite cheerful and positive.

I, on the other hand, just a few months after my head injury, still couldn't drive and was feeling depressed and demoralized. Hearing his story and talking to him made me crumble inside, and I sat there on the sofa holding my Mom's hand and fighting back tears. Tears of both fear and inspiration. I'll never forget that man and the impact he had on me that day. Still, it took me until nearly a year after my own head injury to seek out the support and help of other survivors.

It's true that we all work in our own time, and come to where we need to be when we're ready. I think I'm where I need to be now, and I'm glad I'm starting to find others who share similar stories and challenges. Some of these discoveries have been accidental, like when I made a new Facebook friend through other interests and soon learned that she was also an anosmic who had a Facebook page on the subject (Senseless Life: Living with Anosmia). Others have been found through my searches, like the Brain Injury Support Group and the Traumatic Brain Injury Survivors page on Facebook.

My objective now is to make this blog not just a forum for my own experiences, but to include those of others and make it a reciprocal community for other head and brain injury survivors, as well as a place that helps raise awareness of these types of injuries among the general public. After all, we all have heads, and they are there for us to protect and use for the benefit of ourselves and others.